Specialty pharmacy delays delivering drugs: I have not had a RX refill delivered on time since last September 2022. I take Revlimid (lenalidomide) and Ninlaro. Both must be ordered through a specialty pharmacy and shipped to me. I've used 3 different specialty pharmacies. The first, Kroger, was the best, but fell out of network for Revlimid. Accredo was recommended and was by far the worst. One delay was 4 weeks with every excuse used to explain the delay. Every order was delayed significantly from October 2022, through January 2023. I worked with my physician's office to change to CVS. So far, with two refills, both have been delayed a day or two due to CVS issues processing the refill. My current refill is delayed due to CVS requiring payment of the co-pay in advance to ship. That is fine. My credit card has been on file with CVS for payment of the co-pay ($1474.39)! Does anyone have a good experience with their specialty pharmacy? Do you receive medications, especially Revlimid, on time?

I hope everyone is finding a way to move their body each day this month for the challenge. If you don't get 20 mins per day, then just aim for whatever your body can do on a given day! It's okay if you're not at 20 mins every day yet. I was barely there a year ago. I was happy if I could get out of bed, walk to the living room, and park myself on the couch for the day watching tv instead of laying in bed all day! Or sitting the front or back yard in the sun for 10-45 mins to get fresh air, sunshine and not be stuck inside while recovering. I have been doing a lot for this challenge (and with work) since the 1st of the month and feel tired now. Yesterday was my "rest" day from doing extra exercise. I spent about 1-2 hours cooking and cleaning, and about an hour standing around while with a personal training client. That was enough for me since I was tired, and my back was sore because I pulled something almost a week ago - it's healing up slowly but surely. I had to lie down and stretch, which was not easy to do, yesterday after standing just over an hour in the kitchen making food for the week. Today, I played a couple of games of softball which felt difficult today. My body felt slow and weak, back still sore, but it got me out and exercising. I love to play and am so happy I am able to do that again. It gets me moving and allows me to be around my friends again after everything I have been through. It's the thing that brings me so much joy, and aside from the usual "living for my family" cliches, it was the one thing that if I was not going to be able to do it again, or be active in any way, I would not have wanted to keep living. So I guess for me, personally, being able to play softball again was my reason for living. And here I am, playing softball 4 days per week! And starting flag football for a second season! I am going to enjoy being able to move my body this much while I can now that I have experienced how easily I could lose it! Some days are harder than others, but I won't stop yet. I'm just getting started!

Hello! I am newly diagnosed with MM. I am 66 and live in Bend Oregon. It was discovered after my Kidney's were in failure and I ended up in the Hospital for 5 days in early January. This led to many appointment and lab work to determine the cause. Just have a full MRI and they found proof of MM. Also had a Bone Marrow Biopsy but waiting on results. Now trying to find a specialist in my area to start the treatment process. Thanks for listening to my story!

Hi all, my Mum 74, is possibly heading in for a transplant in April/May. Its been a very fraught and challenging decision to make for us for a variety of reasons, but the 3 big ones are 1. Here in India transplants in patients her age is virtually unheard of and all the specialists we consulted with were largely discouraging. 2. We will have to travel to the US for the transplant which just adds to all the anxiety and its very difficult to feel "ready" for something that is so FAR away both in terms of actual distance but also in that the reality of it is not HERE. And while she is baseline eligible she still needs the more comprehensive evaluation to know if we should/could go ahead. 3. She hasnt been able to connect to a lot of other MM folks her age and who have gone through transplant around her age. We've been able to talk to 2-3 folks but I think to her thats not been enough to build her confidence. I think what she needs is to be able to see herself in someone else and see that if they got through it so can I. I'd really really love for her to be able to talk to more people who are on the other side of this who can give her an honest take on what their experience was like, good bad ugly so she knows what she has to prepare herself for from people who got through it! So we can embark on this fully ready!

Hi all, my Mum 74, is possibly heading in for a transplant in April/May. Its been a very fraught and challenging decision to make for us for a variety of reasons, but the 3 big ones are 1. Here in India transplants in patients her age is virtually unheard of and all the specialists we consulted with were largely discouraging. 2. We will have to travel to the US for the transplant which just adds to all the anxiety and its very difficult to feel "ready" for something that is so FAR away both in terms of actual distance but also in that the reality of it is not HERE. And while she is baseline eligible she still needs the more comprehensive evaluation to know if we should/could go ahead. 3. She hasnt been able to connect to a lot of other MM folks her age and who have gone through transplant around her age. We've been able to talk to 2-3 folks but I think to her thats not been enough to build her confidence. I think what she needs is to be able to see herself in someone else and see that if they got through it so can I. I'd really really love for her to be able to talk to more people who are on the other side of this who can give her an honest take on what their experience was like, good bad ugly so she knows what she has to prepare herself for from people who got through it! So we can embark on this fully ready!

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In 2015 I went to a doctor for an unrelated reason and they did some specialized blood tests. One of them showed that I had a marker for MM and I was sent to a blood cancer doctor. For years I went in once a year-then twice a year and slowly little by little my Mspike and IgG would go up a little-then down a little-I never had any symptoms but little by little I finally reached the smoldering phase-Naively I told myself year after year that it was never really going to become "real"" MM. This fall my numbers were right on the treat or wait line. My doctor recommended treating. I as shocked-as I really had convinced myself it wouldn't happen to me-but he convinced me that if I started treatment now hopefully I could avoid some of the bad outcomes so I agreed. So in January I started with 25mg of Rev plus 325 mg of aspirin. I mostly read of other patients taking a trio of drugs. I go to a very reputable cancer center and my doctor is known for his research and treatment with bone marrow transplants-so I know I am in good hands. I am 77 years old and in good health otherwise. My M spike has decreased by a small amount for the last 2 months. I am tolerating the rev pretty well-other than the fluctuating GI problems and some fatigue I''m doing well. Sorry this is so long-but thats my story and why I consider myself to be newly diagnosed

I am my Husband's care giver, I am trying to find out how to help him as much as possible, also looking for friends to talk to about this. Thank you Cyndi

Newly on Revlimid-( month 2) Swinging from constipation to diarrhea which I think is caused by too much treatment of the constipation-taking miralax- trying different dosages-senna tea-drinking lots of water. Any other ideas? I hate talking about this-